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An exercise to prepare me for my evalution

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  • An exercise to prepare me for my evalution

    I want to write this post as an exercise, to prepare me for my next step in my ongoing treatment for HCM. Once this is complete, if you have any comments or advice, it would all be appreciated.
    But as Groucho Marx once said “Pardon me while I have a strange interlude.”
    This exercise had its beginnings in a conversation I had yesterday with Lisa.
    (Here is where its gets strange)
    I believe strongly in many things, but among my stronger viewpoints is toward the superiority of capitalism. I feel that in a society that wants to continue to progress, the fairest and strongest motivation in general is through financial reward. (Trust me; this is not a political post)
    This is even truer for the medical field and the reason why America leads the world in medical innovation. Although most people in medicine probably have an additional desire to help others, the fact that their job can be pretty gross, and that they have to deal with people at their worst, it doesn’t hurt that they are well compensated.
    There are exceptions and Lisa is among them. Of course she has a selfish motivation in the fact that she has HCM. And yes she has had close personal losses due to this condition. But look at this organization, look at this website! It is impossible to fathom the drive that it must take to continue to do this month after month, year after year.
    Without HCMA, the general ignorance of this condition goes up 1000%. Without HCMA, I could have blindly followed my Doctors suggestions and have had an Ablation by now. I could have required a pacemaker. And after the meeting in Orlando, I could be facing a very uncertain future with scar tissue in my heart.
    Like many of you, I am very thankful that this organization exists, and for the dedication that Lisa and others put into keeping it going and getting true information into the thoughts of people who need it.
    (Interlude Over)

    (Exercise Begins)
    Now that I’ve got HCM, what do I want? I want as normal a future as possible.
    I want to not be tired all the time. I want the times when I have to stop what I’m doing and take a break to be once or twice a month, not once or twice a day.
    I want to consistently be a source of help to my wife in raising my two children (presently ages 3 and 5).
    I want to be there for Alyssa & Jack, and for them to have a Father as a source of experience and advice for 30-40 more years.
    I want to be a true partner with my wife for the same amount of time. I want to love her for as long as my body holds up, and to be able to chew down some Viagra when it starts to wind down.
    As my children grow, I want to show them their country and the world. I want to show them how to ski. Although hiking the Grand Canyon is probably out no matter which direction I choose for treatment, I would at least like to take the donkey ride with them.
    Once the kids are old enough for my wife and I to travel by ourselves, there are places I want to see and share with her. I want to be able to sip a wonderful glass of red wine with her in Australia, Italy, or Spain, as well as going back to Napa & Sonoma.
    I would like to start a vegetable garden, and have the strength to maintain it.
    I would like to be able to paint my daughter’s room purple. I would like to paint our guest room anything then what it is now.
    I would like to build a second deck below our present deck and maybe screen it in so that the kids can still have someplace outside to play, even when it’s raining.
    I would like to stop paying the lawn guy $70 a month.
    I would really like to start exercising again, which has been the only real way I have ever been able to lose weight. I don’t need to train for a marathon, but to walk/jog 10-15 miles a week would be wonderful. I also would like to be able to bike ride with my kids when they finally learn to ride a bike themselves (which presently looks like it may take one or two more decades).
    So, in conclusion, I do not just want my life to continue, I want to be able to live.
    So the real answers I want from the doctors up at NEMC, is what is the best approach to getting what I want.
    Are drugs just putting off the inevitable surgery?
    Can I get this level of quality of life through drug therapy? For at least a significant amount of time (5-10 years)?
    Will a myectomy, or a myectomy plus some drugs get me to where I want to be? Is it better to do it now at 45, then to try drugs for 5-10 years and have to do it a 50-55?
    Now that I am the 1 in 2000 who gets to HOCM, am I just plain asking too much?

    Thanks for the patience of anyone who actually read through this whole thing. I think it really helped focus me for what lays ahead in Boston in 4 weeks.
    Fx

  • #2
    Re: An exercise to prepare me for my evalution

    FX, Print out a copy of your post and carry it with you to NEMC. You don't want to forget a single thing in it. You have four wks to add even more. You're not expecting too much, but it's hard to put into words with an audience. I know the docs there will be happy to discuss all these points with you. You may or may not have some unrealistic goals (skiing? - time will tell). Best wishes as you wait out the next 4 wks, hope it flies by for you and the pieces fall together for you once you are there. Linda

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    • #3
      Re: An exercise to prepare me for my evalution

      First,
      Thank you... your words were very sweet and honestly were very touching

      Second,
      I LOVE YOUR QUESTIONS -
      a few brief answers - VIAGRA _ NO NO NO NO NO NO!!!!!

      It may be better to have someone build the deck for you...

      Purple is my favorite color your daughter has good taste!

      and many of your other questions will have answers once you get to Boston!

      Best wishes!
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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